A letter from Alem Matthees helped lead to a breakthrough in chronic fatigue syndrome.Source:Supplied

ON A hot dry Perth day in March 2014, Alem Matthees finished writing a letter.

It was a very polite letter, from a very polite young man. Alem wanted an answer to a simple question.

The letter travelled over the internet from Perth to London. It entered an academic bureaucracy.

A month later, a reply came, signed by a Records and Information Compliance Officer called Paul Smallcombe.

“I am afraid that we cannot supply this to you,” the letter said.

Alem Matthees did not believe that. He chose not to give up.

HOUSEBOUND

Alem Matthees is sick. He is “housebound” — with an extremely frustrating disease: Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

“I live alone with the regular support of family,” he says. “I have a background in information technology but it has been years since I have had steady employment, due to being housebound while struggling daily with symptoms and relapses.”

When Alem first got sick, many doctors believed ME/CFS was probably a psychological problem.

Lots of people were complaining of similar symptoms — getting sick after an infection and never quite getting better; and being unable to exercise or do activities without enormous physical repercussions.

It is estimated that 0.4 per cent of people are affected with ME/CFS, with the average age of onset being 33, and women affected more often than men. Some later recover, but others don’t. Many people get sick after a sudden virus — as if they got the flu and never got better. Despite the large numbers of patients with similar problems, medical science couldn’t find much in the blood tests to explain it, nor offer much in the way of treatments.

The field of psychology had answers though. Answers aplenty. What is more, it had data to back them up. Or so it seemed.

Alem’s letter, which set things in motion for a total rethink of how his debilitating disease is treated.Source:Supplied

A DATA FIGHT IS A DIRTY FIGHT

The letter Alem Matthees wrote in 2014 was about data held by a group of UK academics and psychologists.

The psychologists, based at the Queen Mary University of London, had done a major study into treatments for ME/CFS, which was published in 2011. Alem wanted to see the data from the study and filed a request to see it under the UK Freedom of Information Act.

Their study (called the PACE trial), was full of data that showed a lot of ME/CFS patients could be improved by exercise and counselling (cognitive behavioural therapy) was released in a prestigious medical journal called The Lancet.

Around 22 per cent of patients were counted as “recovered”.

The study made a big splash, and contributed to the perception ME/CFS was all in patients’ heads. All around the world, doctors recommended to sick patients that they exercise more.

But the authors were proving rather tight-fisted when it came to their data. They said no to Alem.

They said no to US psychology Professor James Coyne. They received more than 30 requests to see the data under the Freedom of Information Act and still the data was not public.

Rumours were circulating that the trial was not as it seemed, but without the full data, nobody could say for certain the size of the problem.

Chronic fatigue syndrome affects about 0.4 per cent of Australians.Source:Supplied

DEFENSIVE, MUCH?

Eventually the UK Information Commissioner’s Office had enough. It told the PACE trial authors they had to release the data. The authors appealed the decision. They claimed confidentiality of the subjects of the study, although, as the tribunal would point out, the data was all anonymous.

Alem wrote another letter later in 2014. He also provided information and evidence to the UK information tribunal. All this he did through the fog of serious illness.

Sometimes his symptoms — ME/CFS sufferers endure many, but one of the most debilitating is unrefreshing sleep — would lighten for a short period, only to worsen again. Each day was a struggle.

By 2016, the professors of Queen Mary University London were running out of excuses. They had spent a quarter of a million pounds trying to prevent their data being released.

And finally in August 2016, it was ruled they must release their data.

“It meant all the time and effort spent getting it was not for nothing,” Alem said.

THE BIG REVEAL

When the psychologists finally released the data, what it showed was shocking.

During the study, they had changed the thresholds for what counted as recovery. Patients who were still sick got counted as recovered.

David Tuller, a lecturer in Public Health at the University of California Berkeley, calls the study “not science.”

Another psychology academic Carolyn Wilshire said: “Claims were made regarding the benefits of these therapies that went well beyond what can be justified by the data.”

She worked on a new analysis of the PACE trial data that showed how many people would have been counted as recovered if the academics had not changed the thresholds for recovery. It was between 3 and 7 per cent, instead of 22 per cent.

“Incorrectly claiming that a significant number of CFS patients can actually recover from a treatment can cause real harm,” she said. The treatments the PACE trial found in favour of are risky.

While a small amount of exercise can be good for some ME/CFS patients, for others, any amount risks making their health worse.

PSYCHOLOGY: IN CRISIS

You might hope a dodgy study like that is a one-off. But the field of psychology has been plagued recently with revelations that many of its findings are, in fact, not findings it all.

In their house in California — not far from the headquarters of Google and Facebook — Prof Davis spends most of the time he is not at work caring for his son. Whitney has a severe case. He can’t walk or eat. He spends his days in a darkened room. He communicated via written notes until even that became too exhausting.

As Whitney’s health declined. Prof Davis turned his razor-sharp brain — and his considerable clout in the scientific community — onto the disease that was wasting away his son.

He chose to use the process that had worked so well in his genetic research. He now runs the Open Medicine Foundation — which is committed to solving ME/CFS and keeping data open.

The psychological theory of chronic fatigue syndrome — badly damaged by revelations that the PACE trial from London was fudged, began to crumble as results started emerging from Prof Davis’ work.

PHYSICAL EVIDENCE

In 2016 scientists working with Prof Davis finally found a physical explanation. It turns out the metabolisms of people with ME/CFS are operating differently from those of healthy people.

That never showed up in the standard blood tests, because the technology for testing metabolism is new.

Now, however we can see that most of the metabolic signatures you’d expect to find in a person are at low levels in people with ME/CFS.

It is like their metabolisms are running on empty (It is worth pointing out that the metabolism study was open with their data. They promptly put it all online, for anyone to look at.)

Last year was a rich period for ME/CFS research.

• Researchers in Norway stumbled across a cancer drug that seems to cure some patients and are doing more tests on far more people.

• Research from Melbourne found more evidence for the metabolism problems mentioned above, and then …

• In the last weeks of 2016, more research from Norway seemed to pinpoint the exact part of the metabolism that is at fault (certain proteins seem to be blocking key enzymes from doing their job).

Alem Matthees doesn’t get the credit for all this research — it was going on before his Freedom of Information request finally succeeded.

He does get credit for the research landing in a more receptive environment. People that matter — including people who fund research — are now far more willing to listen when a study says the disease is in the body, not the mind.

All this is extremely hopeful for people like Alem Matthees. “I am hopeful about biomedical research,” he says. “In the long-term.”

Research is slow, and what ME/CFS never had before was people taking it seriously. That has suddenly changed.

ME/CFS is also winning the attention of young researchers who sense a breakthrough coming. That breakthrough may not happen soon, but it will likely be sooner that it would have been without the efforts of Alem Matthees.